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Skip The Endoscopy!

cautiousC

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cautiousC Newbie
cautiousC
Posted

I just had to get on this forum in the hopes i can prevent one other person from getting an endoscopy. I know the doctors have their reasons, but before you blindly go to get this test, please read my experience:

I had some severe stomach pain and bloating which sent me to my doctor. She gave me the blood test for Celiac Disease and my blood numbers were off the charts. In hindsight, I'm sure I had celiac my entire life. I was sent to a not-so-knowledgeable GI specialist, who insisted a get an endoscopy to confirm the celiac diagnosis. I wish I asked why I needed an invasive test when the blood test was SO positive!! Instead, I blindly followed his advice and went to get the endoscopy. I have since asked, and he tells me it was to differentiate a gluten allergy from actual celiac disease. But if the treatment is the same, why did i need an additional test?

Due to the endoscopy, I have permanent and severe acid reflux. It started immediately after I woke up from the procedure. I modified my diet to exclude coffee, caffiene, tomatoes, spicy foods, alcohol, chocolate and mint in addition to all gluten containing foods. Still, I need medication every day. My celiac symptoms went away after only months on the gluten-free diet, but the stinging pain of acid reflux haunts me now 4 years later. I know my acid reflx is due to the endoscopy because i NEVER had acid reflux (not even once), before the endoscopy.

Now, I'm pregnant, and the only acid reflux medicine that works for me is a Class C medication (which means it is not proven safe for pregnancy). While my doctors tell me my need outweighs the risk, I'm again regretting blindly following that doctors advice. My family members and children will all get the blood test for celiac disease, but I won't let one of them get an endoscopy.

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ravenwoodglass Mentor
ravenwoodglass
Posted
I just had to get on this forum in the hopes i can prevent one other person from getting an endoscopy. I know the doctors have their reasons, but before you blindly go to get this test, please read my experience:

I had some severe stomach pain and bloating which sent me to my doctor. She gave me the blood test for Celiac Disease and my blood numbers were off the charts. In hindsight, I'm sure I had celiac my entire life. I was sent to a not-so-knowledgeable GI specialist, who insisted a get an endoscopy to confirm the celiac diagnosis. I wish I asked why I needed an invasive test when the blood test was SO positive!! Instead, I blindly followed his advice and went to get the endoscopy. I have since asked, and he tells me it was to differentiate a gluten allergy from actual celiac disease. But if the treatment is the same, why did i need an additional test?

Due to the endoscopy, I have permanent and severe acid reflux. It started immediately after I woke up from the procedure. I modified my diet to exclude coffee, caffiene, tomatoes, spicy foods, alcohol, chocolate and mint in addition to all gluten containing foods. Still, I need medication every day. My celiac symptoms went away after only months on the gluten-free diet, but the stinging pain of acid reflux haunts me now 4 years later. I know my acid reflx is due to the endoscopy because i NEVER had acid reflux (not even once), before the endoscopy.

Now, I'm pregnant, and the only acid reflux medicine that works for me is a Class C medication (which means it is not proven safe for pregnancy). While my doctors tell me my need outweighs the risk, I'm again regretting blindly following that doctors advice. My family members and children will all get the blood test for celiac disease, but I won't let one of them get an endoscopy.

Have you gotten a second opinion on the 'reflux' issue from a different doctor? Did the first doctor do any procedures while he was in there that you know of? Did you get copies of all your records from the GI?

I ask because I wonder if something happened during the procedure that you are unaware of, this should not have happened and it leads me to wonder if there was some sort of damage to the entrance of the stomach from the esophogus (sp- sorry long time since med terminology class). Possibly the spincter was damaged which is now allowing back flow?

If this is the case and it is a functional problem someone might be able to help with this. Not sure about that but it may be worth looking into.

I know this is tough to deal with while pregnant, it sounds like you are doing all you can food wise and not getting much relief. Make sure you have the head of your bed elevated and that you stay upright for as long as you can after you eat, both will help a little bit.

I know this may sound weird but something that has always helped me much more than script meds is pepto bismal. For me it helps to relieve the pain quicker and doesn't have any effects on actual acid production, it can turn your stool black but this is not a cause for alarm.

I hope you can get some relief soon, congrats on the little one and thanks for posting. Problems can and do occur with what many consider simple procedures and I agree with you completely that if you have a positive blood test that really should be enough unless you have been on the diet strictly for at least 6 months and are getting no relief.

helen albanese Newbie
helen albanese
Posted
I just had to get on this forum in the hopes i can prevent one other person from getting an endoscopy. I know the doctors have their reasons, but before you blindly go to get this test, please read my experience:

I had some severe stomach pain and bloating which sent me to my doctor. She gave me the blood test for Celiac Disease and my blood numbers were off the charts. In hindsight, I'm sure I had celiac my entire life. I was sent to a not-so-knowledgeable GI specialist, who insisted a get an endoscopy to confirm the celiac diagnosis. I wish I asked why I needed an invasive test when the blood test was SO positive!! Instead, I blindly followed his advice and went to get the endoscopy. I have since asked, and he tells me it was to differentiate a gluten allergy from actual celiac disease. But if the treatment is the same, why did i need an additional test?

Due to the endoscopy, I have permanent and severe acid reflux. It started immediately after I woke up from the procedure. I modified my diet to exclude coffee, caffiene, tomatoes, spicy foods, alcohol, chocolate and mint in addition to all gluten containing foods. Still, I need medication every day. My celiac symptoms went away after only months on the gluten-free diet, but the stinging pain of acid reflux haunts me now 4 years later. I know my acid reflx is due to the endoscopy because i NEVER had acid reflux (not even once), before the endoscopy.

Now, I'm pregnant, and the only acid reflux medicine that works for me is a Class C medication (which means it is not proven safe for pregnancy). While my doctors tell me my need outweighs the risk, I'm again regretting blindly following that doctors advice. My family members and children will all get the blood test for celiac disease, but I won't let one of them get an endoscopy.

jayhawkmom Enthusiast
jayhawkmom
Posted

I honestly am so very sorry you are dealing with this.

However, I don't think it's appropriate to advise everyone to avoid this procedure. It *may* be necessary to rule out other issues. In my daughter's case...the endoscopy may have saved her life. She had issues that went beyond Celiac, and we never would have known had we not gone through this.

I think weighing pros and cons, and considering the individual is more important than an all out "don't ever do it" message.

I had an endoscopy and also found great relief with their findings. And, I've been much healthier since.

I did not put my older son through endoscopy because the blood test results were enough to convince me he needs to be gluten-free. If he had continued to have problems though... as my daughter did, I'd be more than willing to have the endoscopy to put further issues to rest.

Again... I am sorry that you've had the misfortune to be one of the few who do not fair well after endoscopy. Even more sorry that you are dealing with reflux during pregnancy. I have 3 children...and have always had reflux, and it got 10x worse with each pregnancy. So, I certainly can empathize. I'm glad you shared your story... it just reminds us that we need to use our own better judgment COMBINED with the knowledge that our doctors are armed with.

tummyache Newbie
tummyache
Posted

Yeh, I think it is necessary to have the endoscopy so they can see what else is going on. I'm sorry your endoscopy experience was so bad. I think a second opinion might be godo to get.

Kassie Apprentice
Kassie
Posted

I am also very sorry that you have to deal with this. I think that it is important that some people get endoscopies because some people will have negative blood tests but biopsies will show different and thats how they get diagnosed.

I also suffer from reflux, so bad that i got an endoscopy for that. If we never had done that we would have never found out that i had esophagital thrush (however you spell it). I was able to take care of it. If i had never had the endo., the thrush could have spread making eating very painful.

But i guess getting an endo. depends on who you are and what is needed

GlutenWrangler Contributor
GlutenWrangler
Posted

I'm also sorry about what you're going through right now. It is a very unfortunate thing to have happened, but it is also very very rare. An endoscopy is generally a harmless procedure, if performed by a doctor who knows what they are doing. Maybe your doctor made a mistake?

Endoscopies are good for many different things. They can help to diagnose celiac disease of course, but also H. Pylori infections, gastritis, stomach cancer, and duodenal cancer. In the latter cases, it could mean the difference between life and death.

-Brian

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